This woman lives quite far, but she also has MSK.

This is a true testimony to the treatment MANY of us "spongies" receive when seeking medical attention. Its absurd. I have felt embarassed many times seeking medical attention in Kitchener hospitals and in Owen Sound. Sometimes I find compassion, but I have to literally be unable to speak through my pain and have to be vomiting and near dehydration for that compassion to show. evening party garment by custom made

Just because you cant see our physical pain doesn't mean it doesnt exist. I mean, how can a small organ calcify from the insides, creating and holding CM sized rocks by the numbers, and it doesnt cause pain. Pain. Exhaustion. Infection after infection after infection.

MSK is a rare kidney disease that many doctors and specialists actually DON'T understand. When I was first diagnosed, I asked my doctor if that is why I was always suffering from UTI and stones. She said NO. But that it would definitely cause kidney failure.

Both are false.

MSK is exactly what causes my constant infection (it literally never goes away and is maintained by guesses of what antibiotic will work this week).

MSK is exactly what causes my stones to form. Nephrocalcinosis. Calcification of the kidneys. Stones. I currently have over 20 stones in my left kidney, 7 of which range from 5mm to 11mm. My surgery a few months back was to remove a stone of 14mm, followed by 6 smaller stones in a chain reaction.

MSK itself will NOT put me in kidney failure. Not everyone with MSK will have failing kidneys. However, stone damage and infection beat those suckers up like you wouldn't believe. The more trauma, the higher chance of needing removal or transplant.

MSK sufferers basically have kidneys that suffer from PTSD, so to speak. Our kidneys dont know that they ARENT supposed to hurt. So, they hurt. A lot.

There needs to be much more understanding of this disease. For the Lindas out there. This is terrible!!